Kisqali on PBS, very few will get it.

I logged in today to share a couple of community services I have been using in my area and was deeply concerned about the tone of conversation coming from disgruntled members surrounding the availability of a new CDK inhibitors Ribociclib (Kisqali) on the PBS.  I am dismayed as I do not believe BCNA has mislead anyone.  It is an accomplishment to get any drug up onto the Pharmaceutical Benefits Scheme who are not transparent, so it’s very hard to gauge what, if any progress is being made.  BCNA informs, empowers, represents and links together people whose lives have been affected by Breast Cancer.  Their existence is for their members and as a Consumer Representative, I have seen first hand the work they put into advocating on our behalf, working with stakeholders such as politicians, pharmaceutical companies, health bureaurcracies, cancer medical services and other groups and who have vested interest in our Health, TGA and PBS systems, it’s no walk in the park.  Please don’t disparage or undermine the work that is being done in this area for our benefit.

I agree that the scope for the use of this drug is very limited, and this is disappointing, but it’s a start, not the finish.  Frankly we are at the whim of pharmaceutical companies who determine if our market is worth investing in and there also has to be political will, this is  where BCNA can have an influence but there are no guarantees.  I feel BCNA has been attacked because they are a soft target.   Its not so easy to get a voice elsewhere, so please don’t attack an organisation that has your concerns at heart.

In 2015 there was a Senate Inquiry to consider the availability of new, innovative and specialist cancer drugs in Australia, including "the timing and affordability of access for patients".  BCNA’s interest was to advocate for Kadcyla and Perjeta drugs to go onto the PBS.  A highlight for me as a cancer survivor, was personally presenting the case for Kadcyla to go onto the PBS.  This process took 4 years!

Australia is behind in the adoption of medical technologies, and there are a growing number of patients unable to access some medicines compared with their overseas counterparts.  Fundamental reform to the way cancer drugs are made available requires broad consultation with stakeholders and society.  BCNA gives us a voice. 

 Living for 12 years with metastatic cancer, I do empathise with the group who are struggling to get what they need to live.  We do often look down the barrel of a gun but it’s nobody’s fault that we have metastatic cancer.  I too have had times when I was going to die but I am a strong advocate for myself and others.  We need BCNA to be with us to amplify our voices.   Attacking BCNA whose existence is to make our lives better, who identifies us as a crucial and integral part of them isn’t the way.   Everyone is entitled to voice their concern, but I for one know that BCNA will continue to fight to get better outcomes for us. 

 In the meantime it’s up to us, through our Oncologist and others to keep ourselves top of their mind as its them who are our personal advocates in getting the latest technology to keep giving us a life.

 Cancer is just part of my life now, and I always try to have hope.  I would like to see a philosophy of “Patient Centred Care” but political will has to be there to make this happen.   My medical team are doing a fantastic job keeping me well.   Nonetheless as I have expressed, there are many areas that need to catch up, so we need to keep the conversation going so the powers that be start listening and make changes to the existing for the better.  

I count my blessings that I am still here enjoying life with my family and friends.  I want this for other people who need life-changing treatment as I have had.   

Karen C